Vulvodynia Support
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» Hope to all my suffering ladies
Is there anyone out there with these conditions!! Need Suggestions!!  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Is there anyone out there with these conditions!! Need Suggestions!!  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Is there anyone out there with these conditions!! Need Suggestions!!  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Is there anyone out there with these conditions!! Need Suggestions!!  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Is there anyone out there with these conditions!! Need Suggestions!!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Is there anyone out there with these conditions!! Need Suggestions!!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Is there anyone out there with these conditions!! Need Suggestions!!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Is there anyone out there with these conditions!! Need Suggestions!!  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Is there anyone out there with these conditions!! Need Suggestions!!  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Is there anyone out there with these conditions!! Need Suggestions!!

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Post  painful Sun Jul 17, 2011 4:57 pm

Hello everyone,

I've just joined this forum and would like to share my story and like to find out if anyone out there in same condition?

I am 23 old and my symptoms started about 4 yrs ago with yeast infection. I have very severe bacterial/ yeast infection where i don't have a relive from all the painful symptoms and discharges not even for one hour. I have been continousally examined by many different doctors have done so many procedures but other than yeast infection no dr had anything to say. Its very irritating, but more than that My Biggest Problem is SEX. I have been in a relationship with One guy all over my life and never had a good sex. Every time we try its seems to be impossible for me. He is very understanding unlike other guys, but now it seems like i am loosing him. He always asks me when its going to get fixed??
Recently, after taking all the Antibiotics and treatments when nothing was working, my Gynecologist referred me to a Vulvo specialist. After my visit, my dr says i have Vulvodynia due to bacterial infection. He gave me Antibiotics for yeast and Estrogen cream. and he says if nothing works i can go for surgery. Its been one month i have taking the medications and i have no relive from the pain and other symptoms. I really cant take this anymore. Even if we try to have sex, its feels soo swollen and like an acid being poured on the cut. Another option he mentioned was Botox injection. But i really dont want this.I am thinking to go for surgery.

Is Going for Surgery a good idea? Has anyone out there have done the surgery and have they found any relive or any complications came across with. Please share your ideas.

Thanks

painful

Posts : 1
Join date : 2011-07-17
Location : CA

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Post  Sebby (Admin) Sun Jul 17, 2011 9:16 pm


Hi and welcome to the forum

From what I know of surgury can work but its a huge thing to go through and for me it would be the last option. It seems your gynea has not mentioned anything to do with Pelvic Floor therapy or biofeedback? Not suprising as most drs know little about it.

I would like to know if you have actually tested positive for yeast/bacteria recently? It seems drs are all to quick to give out creams and antibiotics/antifungals even when the women has not tested positive. Its like they do not know what else to do. Make sure firstly that you are tested again to make sure no yeast or bacteria infection is still present.

Then start researching other available treatments. Many women including myself are looking into Pelvic Floor therapy (mine is specifically from www.vulvodynia.com) Dr Glazers biofeedback protocol. I have had a break for a few weeks as had to have another vaginal sensor shipped over. You can also look for a Women's Physical Therapist. Check that they have treated the condition before.

Get yourself a copy of 'The Vulvodynia Survival Guide' Glazer & Rodke for a good all round intro to the condition and treatments.

Also a book many recommend is 'Ending Female Pain' Isa Herrera - she concentrates also on the Pelvic Floor theory. That an unstable and tight Pelvic Floor causes continued pain after the original trauma (either infection or injury) and prevents the vulval skin from healing and proper blood supply getting to the vulvar

Another option is medication used for nerve pain. Either an antidepressant like Amitriptyline or anticonvulsants like Pregabalin. I am on Pregabalin. I feel that it was working coupled with the biofeedback but had a bad flare up recently since being unable to do the exercises so do not feel they work just on there own without other physical treatments.

Im not saying you cannot try surgury but that it would be useful to look into less invasive treatments first.

We have all had to pretty much research this condition and treatments ourselves due to a lot of the medical community knowning little about it. So if a doctor says there is nothing much more they can do for you....check with us first! and as you learn more you will know what is worth trying and what options you have.

As for sex another good book to get is 'Let Me Count The Ways' discovering great sex without intercourse. Klein & Robbins - Im not saying that you will never be able to have good intercourse with little or no pain. But it is true that we have to be very creative with this condition. Try what least hurts to keep the intimacy whether that is oral or touching. Try to experience pleasure again so your brain is not always linking your Vulva to pain.

This is a lot of info to take in so do some research and dont give up trying to find an answer to your pain.

Take Care





Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Zazu Mon Jul 18, 2011 2:07 pm

Hi there,
If you read the recent posts on this forum, you'll find that many women have a similar story - it starts with an infection and then the pain continues, even after the infection has cleared. The pain can be due to hormones, too many nerve endings that sense pain which grow after a sustained immune response to infection, or pelvic muscle problems. Sarah already gave you a great, detailed response on the treatments for this.

I'm surprised, too, to hear that your doctor has only given you one option before the surgery. Usually, they try a topical cream (like estrogen). If that doesn't work, then they can give you a compound cream using drugs that work on the nerve system to calm your nerves (gabapentin or amitriptyline). If that doesn't work then they give you those drugs in pill form, usually amitriptyline (a low dose antidepressant), then gabapentin or pregabalin (an anti-epileptic).

Personally I'd look into a book called "When Sex Hurts' by Dr. Goldstein for a detailed explanation of causes, symptoms and treatment options. Surgery can be quite successful, but it also carries risks. Usually it is more successful if you get physiotherapy alongside it, so that's really key to look into.

Best to you
Katie

Zazu

Posts : 64
Join date : 2011-04-05
Location : Canada

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Post  Sarah001 Tue Jul 19, 2011 7:31 pm

I'm with the other girls on this one, surgery isn't a small thing and should only be considered as a last option after PF therapy, medication etc. All the books above are worth a read but I would try Amy Stein's "Heal Pelvic Pain" first as it's very inexpensive and covers much the same as Isa Herrera's book which is alot more expensive. "When Sex Hurts" is also very good, especially for figuring out what your problem is caused by. Don't rush into surgery just because a Dr can't be arsed to look into current treatment options, there are women out there who have been made worse by surgery so it's a very serious decision. The pelvic floor is something all women with V should get checked properly by a physio who uses biofeedback, it's the only reliable way to see exactly what's happening with those muscles.
Sarah001
Sarah001

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